Amplifying the voices of children.
Honouring the strength of families
Growing in understanding together.

This project captures the voices, experiences and everyday lives of children currently living with a life-altering rare epilepsy diagnosis of:

• Developmental and Epileptic Encephalopathy with Spike-Wave Activation in Sleep (DEE-SWAS)

• Epileptic Encephalopathy with Spike-Wave Activation in Sleep (EE-SWAS)

• Continuous Spike-Wave in Sleep (CSWS)

• Electrical Status Epilepticus in Sleep (ESES)

• Landau-Kleffner Syndrome (LKS)

Drawing on lived experience and research insights, this project aims to build connections with clinicians, therapists, researchers and educators who want to better understand — and improve the quality of life of children living with DEE-SWAS and their families.